News and Knowledge

Disability Disclosure

Many Autistic individuals are provided information during their time in high school or elsewhere that encourages them to disclose their disability across college, employment, and/or social realms. However, making the decision regarding whether to disclose your disability is a deeply personal one and a choice that is yours alone. Data suggests that only 15% (Frost et al., 2019) to 36.6% (Huang et al., 2022) of individuals make the decision to disclose in college, although greater numbers of Autistic individuals have reported disclosing in the workplace (e.g., 25% to 69%; Lindsay et al., 2021). A variety of reasons have been shared regarding why Autistic college students have chosen to disclose or not, but the resistance has been primarily related to prior negative experiences as well as concerns of stigmatization or discrimination (Huang et al., 2022; Van Hees et al., 2015). These concerns have largely resulted from the Autistic individuals’ perceptions that others in addition to institutions/systems fail to understand and/or accept autism.

However, Autistic individuals have shared that they have disclosed in order to help others to better understand them. Specifically, they felt that disclosing has allowed them to explain their differences to others as well as to share information regarding the supports that benefit them (Huang et al., 2022). Most individuals reported a pragmatic approach to disclosure – making the determination to disclose in order to access accommodations, for example, and only in situations when it felt “necessary” (Cox et al., 2017). Autistic college students reported they were more open to disclosing after difficulties arose (e.g., stress, crises), when they felt safe, or when they required a specific support (Van Hees et al., 2015). In this way, many have shared not disclosing their disability prior to or early in their college experiences, and, instead, attempting college with fewer supports and only disclosing after encountering challenges (i.e., retrospective disclosure).

Advantages and Disadvantages of Disclosure

The benefits and drawbacks of disclosure vary for everyone given their unique situation. Some individuals have reflected on the benefits they experienced after initially avoiding disclosing, suggesting that it may have been helpful to have disclosed earlier in their college experience (e.g., Van Hees et al., 2015). Benefits reported have centered on greater acceptance or inclusion by others and access to accommodations. Accommodations as well as the ongoing support or consultation of college Disability Services personnel have both been frequently noted as highly beneficial by Autistic college students. For example, extended time and small group testing are the most often cited helpful accommodations (e.g., Accardo et al., 2019; Anderson et al., 2018; Barnhill et al., 2016; Davis et al., 2021; Jansen et al., 2017) with a wide ranging list of others that have also been identified as supportive such as copies of lecture notes, priority registration (Accardo et al., 2019), assistance with structuring assignments, and access to recorded lectures/lecture transcription (Accardo et al., 2019; Barnhill et al., 2016; Anderson et al., 2018; and Sarrett, 2018). Finally, other benefits of disclosure have been noted as the mental health benefits related to no longer feeling the need to mask or camouflage. Despite the reported benefits, many Autistic individuals have reported stigma and discrimination as the primary reason they avoided disclosure as well as the primary negative consequence they experienced as a result of disclosing (e.g., Huang et al., 2022).

Considerations when Deciding Whether or Not to Disclose Your Disability

Many first-person experiences have highlighted the need to consider the pros and cons of disclosure specific to your situation (Gillespie-Lynch et al., 2017; Shattuck et al., 2014). As noted earlier, many Autistic individuals make this decision based on whether they perceive the “need” for disclosure. Consider these two situations:

• Have Not Been Approved for Accommodations: You can make a direct request for a support that benefits you to your instructor (or an employer) without disclosing your disability. There are many times when these supports may be provided without formal approval of an accommodation being required. In other words, if you have not yet been formally approved for accommodations by Disability Services (in college/university) or Human Resources (if in the workplace), you can self-advocate for the support you need and it may be provided, but it may not. The instructor would not be required to deliver the accommodation unless it was an approved accommodation, registered with your college’s Disability Services office. If you do not have approved accommodations and the instructor required them, they would likely direct you to the Disability Services office (and in the workplace, you would likely be directed to Human Resources).
• Have Been Approved for Accommodations: After you have been approved for specific accommodations by the Disability Services office, you only need to share your accommodation notice (from disability services) in order to obtain your accommodations. You do not need to disclose your disability to your instructor! You may choose to also disclose your disability to your faculty/instructor/staff, but you would not be required to do so for the faculty/instructor to deliver your accommodation(s). Therefore, your interactions with faculty/instructors could focus on sharing that you have been approved for accommodations and discussing how these accommodations may be provided in each course/context.

Making a Disclosure Plan & Practicing It with a Trusted Person

As you make your informed decision about disclosure, consider the (a) who, (b) why, (c) what, and (d) how of disclosure by making a disclosure plan. Although these decisions are complex and nuanced, approaching the decisions carefully resulted in more favorable responses from others and in more positive outcomes, for the most part (Frost et al., 2019). After developing your disclosure plan, identify a trusted person that you can practice your disclosure with to support you in disclosing in the manner you want. Finally, plan and practice for breakdowns in the disclosure conversation or if your self-advocacy fails.

Some examples to consider for a disclosure plan include:

• Who do I want to tell?
  • Disability Services office
  • College faculty/instructors/staff
  • Friends
  • Romantic partners
  • Employers
  • Others
• Why do I want to tell?
  • I want to access accommodations in my college coursework/the workplace
  • I want to access specific college-based services/a program for Autistic individuals
  • It will foster greater understanding in my friendship/relationship
• What information do I want to tell?
  • I have a disability
  • I am Autistic/_______
  • I benefit from ______
  • I learn/work/communicate best when/with ________
• How do I want to tell?
  • Email
  • Phone call
  • Video call (e.g., Zoom)
  • In person meeting
  • With a support person present
  • With notes/a script to guide the conversation

Summary

Making the decision whether to disclose your disability is yours alone. These decisions are personal and should be made following a thoughtful analysis of the pros and cons related to the specific situation you are considering disclosing. If you decide to disclose, make a disclosure plan, rehearse the plan, and plan for and rehearse breakdowns in the conversation to increase that the disclosure experience occurs as you have planned.

 

References

Accardo, A. L., Bean, K., Cook, B., Gillies, A., Edgington, R., Kuder, S. J., & Bomgardner, E. M. (2019). College access, success, and equity for students on the autism spectrum. Journal of Autism and Developmental Disorders, 49, 4877-4890.

Americans With Disabilities Act of 1990, Pub. L. No. 101-336, 104 Stat. 328 (1990).

Anderson, A.H., Carter, M. & Stephenson, J. (2018). Perspectives of university students with autism spectrum disorder. Journal of Autism and Developmental Disorders, 48, 651–665. https://doi.org/10.1007/s10803-017-3257-3

Barnhill, G. P. (2016). Supporting students with Asperger syndrome on college campuses: current practices. Focus on Autism and Other Developmental Disorders, 31(1), 3-15.

Cox, B. E., Thompson, K., Anderson, A., Mintz, A., Locks, T. Morgan, L., Edelstein, J., & Wolz, A. (2017). College experiences for students with Autism Spectrum Disorder (ASD): Personal identity, public disclosure, and institutional support. Journal of College Student Development, 58(1), 71-87.

Frost, K. M., Bailey, K. M., & Ingersoll, B. R. (2019). “I just want them to see me as…me”: Identity, community, and disclosure practices among college students on the autism spectrum. Autism in Adulthood, 1(4), https://doi.org/10.1089/aut.2018.0057 Gillespie-Lynch et al 2017

Huang, Y., Hwang, Y.I., Arnold, S.R.C., Lawson, L. P., Richdale, A. L., Troller, J. N. (2022). Autistic adults’ experiences of diagnosis disclosure. Journal of Autism and Developmental Disorders. https://doi.org/10.1007/s10803-021-05384-z

Sarrett, J. C. (2018). Autism and accommodations in higher education: Insights from the autism community. Journal of Autism and Developmental Disorders, 48, 679-693.

Shattuck, P. T., Narendorf, S. C., Cooper, B., Sterzing, P. R., Wagner, M., & Taylor, J. L. (2012). Postsecondary education and employment among youth with an autism spectrum disorder. Pediatrics, 129(6), 1042-1051.

Van Hees, V., Moyson, T., & Roeyers, H. (2015). Higher education experiences of students with autism spectrum disorder: challenges, benefits and support needs. Journal of autism and developmental disorders, 45(6), 1673–1688. https://doi.org/10.1007/s10803-014-2324-2

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Dr. Lauren Lestremau Allen is a Licensed Psychologist (NY, MD), Board Certified Behavior Analyst-Doctoral, and a Nationally Certified School Psychologist. Dr. Allen is committed to high quality service and support delivery with Autistic individuals and individuals with developmental disabilities and is passionate about training professionals. Dr. Allen is an Assistant Professor at SUNY Empire State College in the Applied Behavior Analysis Master of Science program and the Assistant Director of the SUNY Empire Center for Autism Advocacy: Research, Education, and Supports (CAARES), both of which prioritize compassionate, value-driven care, and client self-advocacy and autonomy.

 

• Email: Lauren.Allen@esc.edu
• LinkedIn: https://www.linkedin.com/in/lauren-lestremau-allen/
• SUNY Empire State College CAARES: www.esc.edu/autism